Dear all,
Good Morning.
I posted my first message in this thread asking Paula about the conference purely for financial reasons (lack of funds), I just wanted to share a hotel room with someone from this forum who might be going. What a turn it took.....
So many of you expressed your emotions, anguish, disappointment, anger,frustration, distrust.......I can go on with more words to describe your feelings. It is a testimony of what PD can do. I am now afraid to read more. I am relatively new to this PD world and too scared to think what might be in store for me.

While reading this thread, the picture that came to my mind was from my childhood, how my home town looked after a hurricane. It was totally unexpected, the whole town was mercilessly destroyed by the force of winds and water, paralyzed but the spirit of people intact. That hurricane was one the things I feared most in my life and now PD seems like that experience, instead of 3 days, its longer. I may be rambling here, but it just shows how troubled I am and how hopeless I feel right now.
Thanks for listening.

girija

This post reflects the sad revelation that can come from talk that has such time limits reflected in the responses. They can take a turn to personal and a debate on who is the most qualified to answer or suffered the most losses from Parkinson's and that is so unfair, I feel sorry for Debi for ever attempting to come here and share her opinion on what she deems MJF has accomplished and what it wants for the future.

Personal egos are so touchy and they always interrupt the flow of anything or anyone wanting to discuss the fact that a cure or even a treatment is the ultimate end for all. You will only get this from activism and no one person is going to do it without all joining in. The subject is not Parkinson's it is a cure or treatment for Parkinson's.

There is a way to work for the good of all whether they be newly diagnosed or late term educated or not and only willilng to offer whatever they have.

Surely all should be made welcome and whatever they say taken as there opinion and welcomed as well.

It's the cure folks......................that's all it is

gotta jump in here. girija, i've been tormented about portraying the reality of advanced pd. i can't tell you how much i beat myself up about these posts and tell myself to get the hell off the board,. it's an addiction too and soooo hard.

i know your post was completely innocent. and i don't know what to say to you about your fear, other than to tell you that everyone is different and you may not get that bad. i can't lie to you. you know the pitch eat well, exercise, etc. and that's true.

i used to be able to keep this at bay, and actually i am doing better - truly think i was starving but i still need all the meds. so there seems to be rooom for improvement at all stages or at least while you can still function.

one way to cope for me has always been thru advocacy projects. i was interested in exploring the interactions that are being created between business, foundation and patients. it doesn't take long to realize that they don't understand us, they don't deal with the abnormal and we are abnormal. we respond with emotion.

but it wasn't the manganese......when are they going to start putting names of chemicals out there?
gdnf denied. they won't stop and treat.....

there lie the reasons for distrust and fury

could you change your fear into fury? but i wouldn't recommend the level of intensity that comes from inside me.

dbiker, your point was crystal clear .....lots of research, no patients. thanks for taking the time to post that.

it's always the path of MOST RESISTANCE that we must travel it seems.

don't give up, you can live with it. may be we should consider something social online once a month, like games or something. my family spent many years in denial and stress, the peace has finally come. i got thru this terrible time because we got together off the board here, still do, we had our own social world. this made such a difference. we talk by phone.

coicidentally, girija, i live in florida and have been thru a hurricane or 15. one time we evacuated and kept drving all the way to peg and brenda's in Tennessee.

i'm here anytime to talk. we need distractions to survive. so maybe we should create some. i won't give you empty words, but i am ready for some levity. oh no one plays here......scrabble?

best to you,
paula

"I've never had advanced pd before."

Thank you, Debi.

You say that whether or not MJFF is achieving its goal of derisking preclinical research is best evaluated by the venture capitalists and pharmaceutical companies who will be taking those risks.

However - maybe I am wrong, but it seems safe to assume that all preclinical research is not created equal and that the assessment of the worthiness of investment in any particular area is somewhat subjective. For example, venture capitalists and pharmaceutical companies might be more likely to evaluate worthiness based on potential market share or size, whereas someone with Parkinson's might be more likely to evaluate worthiness based on potential for improvement in quality of life.

Therefore, deciding which areas of preclinical research should be focused on for derisking would seems like a natural fit for input from the Patient Council – what do you think?

Ok, I'm back - had to take a breather for a moment.

Rosie, thank you, I think that's what I was trying to explain but took nine times as much space to not really put it as well as you did.

Well, one thing that this thread does make clear, at least to me, is that there is a lot of pent-up feeling among PWP that we don't seem to have had a chance to express to the powers that be, shall I say. So yes, MJFF and Debi, who was the only one brave enough to actually try and deal with us, sure got turned into a lightning rod. I empathize, but we had to start somewhere, and while one organization cannot represent all and they're all different, they need to start hearing this huge torrent of...perspective...And MJFF happened to be first in line through being open.

I think the rage and fear and despair about being sick are relevant to organizational entities - why should we pretend that we feel any other way than we do, and that is why the structure and tone of work done on our behalf is so important.

double post

thelma,

not sure whom you are referencing but making this clear;
my point was that patients should be qualified and then i made the mistake of using the pipeliners as an example. i am going to let the rest of the story speak for itself. check all the posts tho, because i do concede, apologize, and am slo to grasp the whole picture because i have out of personal necessity had to skip and skim only. realized last night what i think is perceived as a competition? dunno what to call it but i clearly stated that i was not saying that pipeliners were the only ones. i'm not looking to be on any advisory board.

paula

Just like vowels and consonants, Catholics and non-Catholics, optimists and realists, there are Parkinson people and the temporarily healthy. (Credit for last phrase goes to Greg,I think).

One of my biggest, illogical fears is that somehow,someday I would end up in prison. In actuality, I am honest and law-abiding, but suppose I panic at an auto accident and flee the scene or perhaps I might inadvertently take a book from Barnes and Noble and be stopped in the mall, unaware of my alleged thievery. Off to jail for me! It is a ridiculous worry. I hope.

However, in a way, I am already in prison. This disease is always incarcerating me and daily it reminds me. In this prison, there is a possiblity of pardon, but also the probability that the pardon will never come. I know all of you share this sentence, and I appreciate so those of you who advocate, like inmates reading law books.

Jayne, your comment to Debi that we are not unintelligent, we just look it, is so true. Also, the feeling of immunity from Parkinson's by those without it is predictable. Without a doubt some of those who walk unfettered by PD today might be in for that inevitable thumb twitch tomorrow - so innocent in appearance yet so malignant and insidious in its forecast.

I know I should do more, period. It is just that I am trying hard to hold on to normalcy until I no longer can. I so want to disappear unnoticed into the world of others. However, the legion of "us" marks my place.

By the way, I grew up in Philadelphia and play scrabble daily. Loved the first and depend on the second for relaxation.

Ann

I post so much, thought , "I'm trying to reduce my posts, etc etc. i can't post again." but why ignore your message, it is really appreciated because you, too, have been here since??? i am thinking for almost the whole ten years?

i hope i'm not wrong in detecting the humor in confessing your imagined fear of prison...lol. Those that know you, will agree I think that you don't look much like a person who would commit a crime. [Ann is a petite, blonde, retired teacher with a handsome husband who is funny and a local politician??? or was at one time?]

if you can blend in normal do it. the whole physical, social isolation aspect is ignored in these conversations with no body language.

the joke was all bob's fault.
nice to hear from you,
paula

Neither have I but to paraphrase W.C Fields I'd rather be an advocate,activist and altruist than being in Philadelphia.

Apologies to you Carolyn! and to W,C, wherever you are. Bob C